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Hello from new forum member

Awaiting a neuro appointment and wanted to say hi. TL:DR at bottom.

(I’m not trying to get anyone to give me a medical opinion on what I’m feeling, and fully understand that they occur in multiple conditions. I just wanted to maybe exchange a few lines with others experiencing similar sensations.)

I used to have migraines with visual aura of a blue flash in the top left area of my vision. Over the last year or so I’ve been getting that plus other flashes in both my left and right peripheral vision but haven’t had a migraine in 5 years.

There’s some scarring in my right retina next to the optic nerve that I see a consultant about every 9-12 months. It was diagnosed about 5 years ago I think. The consultant believes that some sort of oedema caused the scar but they don’t know what causes the oedema. The scar hasn’t changed in all the time it’s been monitored.

Before Christmas I started to feel tingling and pins and needles in my left hand, which felt very much like some pinched nerve symptoms but without the pain. It gradually spread in my arm and leg and also into the left side of my face and neck. In the last week it’s started to occur on my right side too, plus I can occasionally feel it in my scalp and in a couple of patches on the left side of my back. It’s always a stronger sensation on my left side. Yesterday there was an odd, uncomfortable sensation in my arm when I was exercising, like pins and needles concentrated and travelling quickly along a 6” patch of my forearm, almost like the tingling you get from bashing your funny bone but again without the pain. I stopped exercising for the day and the sensation stopped and hasn’t returned.

About a month ago I was sitting at my desk at work, completely awake and typing an email, when I felt as though there had been an earthquake. In my perception everything but me moved one foot to the right then back again. I checked the British Geological Survey website but nothing happened on that day, and nobody else around me felt it.

I had insufficient iron levels due to blood loss earlier this year (being treat for PCOS, which caused the bleeding) and took a course of iron tablets for that, and my most recent tests show my vitamin d is 31 whereas the doctor would like it to be around 50, so I’m taking 4000ug of vitamin d per day for that. All other tests have been inconclusive so far – blood glucose and hormone levels are normal, no trace of antinuclear antibodies, etc. In the last few days a virus-y fatigue has set in with me wanting afternoon naps and an early bedtime every day.

My mother and brother both have dermal autoimmune conditions and I was diagnosed with one a few years ago, but it’s not affected me for quite a while, and both my parents have neurological conditions (epilepsy and Parkinson’s). My sister and I both have ADHD.

I’m doing my best to make sure I eat well, drink plenty of water, get a decent amount of sleep, exercise and keep my stress levels low. My manager at work has a chronic condition so he’s really good whenever I need to see a doctor. or go to the hospital.

It’s just really worrying, you know?

TL:DR:

Just looking for some empathy, or any advice that could be passed along.

Flashes of light in peripheral vision

Scar on retina

Tingling / pins and needles / numbness spreading

Personal earthquake!

Vitamin D levels 3/5 what the GP would like, all other levels normal.

Autoimmune and neuro conditions in direct family

Waiting for neuro appointment, not sure of wait times but could be as long as mid-August before I’m seen

Hi welcome burnie95 I have had flashes but they were migraines, I haven’t had one for 3 years but my neurologist says that could be why I have a lesion in my white matter. I have two autoimmune diseases, underactive thyroid and coeliac disease. The waiting time can be a long time for the neurologist they have very heavy case loads, if they think it’s urgent they will give you an earlier appointment, or that your GP can ask for an earlier appointment. I would stat writing down a list of your symptoms and if you have any medications as sometimes some of your symptoms could be caused by your tablets that you take. Also they have to do a lot of tests before they are able to tell you what it is that you have. This can take time. You don’t say if you have had any tests yet there are quite a few illnesses that have to be ruled out first. I am still under the neurologist as yet even though he says that I don’t have it, he wants to see me next year just to make sure my GP he saying that he is making sure, the look on my GPs face when I said that the neurologist thought it maybe my tablets, the neurologist did say that I had a few slow reactions and that I had shakes in my left arm, I think that’s why he is seeing me next April. Good luck. Kay

Hello Kay

Thanks for your response. I’ve been keeping a note of symptoms and will start putting these into a diary instead of just a memo on my phone.

I used to have migraines and the aura was bright blue but only in the top left field of my vision, and coincided with being premenstrual. I haven’t had a migraine in about 5 years but I have flashes of different colours all around my peripheral vision that don’t seem to coincide with hormonal fluctuations, though I acknowledge it could be a migraine symptom.

So far I’ve had several blood tests covering vitamins, minerals, hormone levels (inc thyroid and parathyroid), glucose, autoimmune antibodies and several others that I can’t recall. The GP tested my reflexes, movement, etc at my last appointment.

I take prescription medications and paraesthesia is listed as a side effect of on of them, but my paraesthesia started before I began taking it.

Is there anything you’ve been doing or taking that you’ve found helpful with your symptoms?

Hi burnie95

The tests that the neurologist does are different, they have a blood test but they check for lupus and a few other things. I had a MRI test of my head, that was where they found a lesion in my head, I also had a lumber puncture, this test is looking up for bands I can’t remember the name at the moment.

I am not taking anything for my symptoms as the neurologist doesn’t think I have MS, but I do have a few, my left hand shakes I have a pain in my hip, my blood pressure is on the low side, so when I get up I feel all dizzy and i have double vision plus a few other things.

I do take a few medications, well alot really to many to write down. My GP had me take an xray for my hip, excepting arthritis, was blown away to find out that there was nothing so the GP gave me naproxen for it, it doesn’t take away all of it but it’s a lot better, I already take cocodamol 30/500, as I said I take a lot of tablets.

Ask as many questions as you want here, there is always someone who maybe able to answer your questions, they call this time limboland as you have to wait a long time, I had an MRI in August, then the neurologist in October, then the lumber puncture in January but the appointment for the neurologist was in April, was quite a nerve wracking time to wait, thank goodness everything was fine well mostly.

Some people have waited a while before they are diagnosed or not as the case may seem. I hope things go well. Kay